Abstract:
BACKGROUND:Professional guidelines have addressed ethical dilemmas posed by a few types of nontraditional procreative arrangements (e.g., gamete donations between family members), but many questions arise regarding how providers view and make decisions about these and other such arrangements. METHODS:Thirty-seven ART providers and 10 patients were interviewed in-depth for approximately 1 h each. Interviews were systematically analyzed. RESULTS:Providers faced a range of challenges and ethical dilemmas concerning both the content and the process of decisions about requests for unconventional interfamilial and other reproductive combinations. Providers vary in how they respond - what they decide, who exactly decides (e.g., an ethics committee or not), and how - often undergoing complex decision-making processes. These combinations can involve creating or raising the child, and can shift over time - from initial ART treatment through to the child's birth. Patients' requests can vary from fully established to mere possibilities. Arrangements may also be unstable, fluid, or unexpected, posing challenges. Difficulties emerge concerning not only familial but social, combinations (e.g., between friends). These arrangements can involve blurry and confusing roles, questions about the welfare of the unborn child, and unanticipated and unfamiliar questions about how to weigh competing moral and scientific concerns - e.g., the autonomy of the individuals involved, and the potential risks and benefits. Clinicians may feel that these requests do not "smell right"; and at first respond with feelings of "yuck," and only later, carefully and explicitly consider the ethical principles involved. Proposed arrangements may, for instance, initially be felt to involve consanguineous individuals, but not in fact do so. Obtaining and verifying full and appropriate informed consent can be difficult, given implicit familial and/or cultural expectations and senses of duty. Social attitudes are changing, yet patients' views of these issues may also vary, based on their cultural backgrounds. CONCLUSIONS:These data, the first to examine how clinicians make decisions about unconventional reproductive arrangements, highlight several critical ethical questions and ambiguities, and variations in clinicians' responses. While several professional guidelines exist, the current data highlight additional challenges, and have vital implications for improving future guidelines, practice, education and research. TRIAL REGISTRATION:Not applicable.
journal_name
BMC Med Ethicsjournal_title
BMC medical ethicsauthors
Klitzman Rdoi
10.1186/s12910-017-0177-xsubject
Has Abstractpub_date
2017-02-28 00:00:00pages
18issue
1issn
1472-6939pii
10.1186/s12910-017-0177-xjournal_volume
18pub_type
杂志文章abstract:BACKGROUND:Various forms of Clinical Ethics Support (CES) have been developed in health care organizations. Over the past years, increasing attention has been paid to the question of how to foster the quality of ethics support. In the Netherlands, a CES quality assessment project based on a responsive evaluation design...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-019-0418-2
更新日期:2019-11-01 00:00:00
abstract:BACKGROUND:A child is a developing person with evolving capacities that include autonomy, mental (decisional) capacity and capacity to assume responsibility. Hence, children are entitled to participatory (autonomy) rights in South Africa as observed in the Children's Act 38 of 2005. According to section 129 of the Act ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-016-0150-0
更新日期:2016-11-02 00:00:00
abstract:BACKGROUND:The boundaries between health-related research and practice have become blurred as initiatives traditionally considered to be practice (e.g., quality improvement, program evaluation) increasingly use the same methodology as research. Further, the application of different ethical requirements based on this di...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-015-0039-3
更新日期:2015-07-07 00:00:00
abstract:BACKGROUND:Over the past 25 years, there has been growing recognition of the importance of studying the Ethical, Legal and Social Implications (ELSI) of genetic and genomic research. A large investment into ELSI research from the National Institutes of Health (NIH) Human Genomic Project budget in 1990 stimulated the gr...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-016-0121-5
更新日期:2016-07-08 00:00:00
abstract:BACKGROUND:Researchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for rese...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0191-z
更新日期:2017-05-11 00:00:00
abstract:BACKGROUND:The study examined the knowledge and attitudes to personal genomics testing for complex diseases among Nigerians and identified how the knowledge and attitudes vary with gender, age, religion, education and related factors. METHODS:Data were collected using qualitative method in 2 districts of the Federal C...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-15-34
更新日期:2014-04-27 00:00:00
abstract:BACKGROUND:France has long been a country of immigration and in some respects may be seen to have a generous policy with respect to asylum seekers and access to health care for migrants. The French state notably provides healthcare access for undocumented migrants, through state medical aid and since 1998 has had a hum...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00500-7
更新日期:2020-07-13 00:00:00
abstract:BACKGROUND:As genetics technology proceeds, practices of genetic testing have become more heterogeneous: many different types of tests are finding their way to the public in different settings and for a variety of purposes. This diversification is relevant to the discourse on ethical, legal and societal issues (ELSI) s...
journal_title:BMC medical ethics
pub_type: 杂志文章,评审
doi:10.1186/1472-6939-12-11
更新日期:2011-06-14 00:00:00
abstract:BACKGROUND:The patenting of human genes has been the subject of debate for decades. While China has gradually come to play an important role in the global genomics-based testing and treatment market, little is known about Chinese scholars' perspectives on patent protection for human genes. METHODS:A content analysis o...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0271-8
更新日期:2018-04-24 00:00:00
abstract:BACKGROUND:South Africa currently has a pluralistic health care system with separate public and private sectors. It is, however, moving towards a socialised model with the introduction of National Health Insurance. The South African legislative environment has changed recently with the promulgation of the Consumer Prot...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-14-15
更新日期:2013-03-21 00:00:00
abstract:BACKGROUND:Between 2013 and 2016, West Africa experienced the largest ever outbreak of Ebola Virus Disease. In the absence of registered treatments or vaccines to control this lethal disease, the World Health Organization coordinated and supported research to expedite identification of interventions that could control ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0201-1
更新日期:2017-06-26 00:00:00
abstract:BACKGROUND:The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research studies using tissue collected from a forensic post-mortem were recently ini...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0225-6
更新日期:2017-11-29 00:00:00
abstract:BACKGROUND:Ethics committees typically apply the common principles of autonomy, nonmaleficence, beneficence and justice to research proposals but with variable weighting and interpretation. This paper reports a comparison of ethical requirements in an international cross-cultural study and discusses their implications....
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-3-2
更新日期:2002-04-19 00:00:00
abstract:BACKGROUND:Biobanking is a relatively new concept in Egypt. Building a good relationship with different stakeholders is essential for the social sustainability of biobanks. To establish this relationship, it is necessary to assess the attitude of different groups towards this concept. The objective of this work is to a...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-019-0394-6
更新日期:2019-08-09 00:00:00
abstract:BACKGROUND:Moral Case Deliberations (MCDs) are reflective dialogues with a group of participants on their own moral dilemmas. Although MCD is successful as clinical ethics support (CES), it also has limitations. 1. Lessons learned from individual MCDs are not shared in order to be used in other contexts 2. Moral learni...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0335-9
更新日期:2018-12-22 00:00:00
abstract:BACKGROUND:We analyzed the patients' perception of prenatal diagnosis of fetal cardiac pathology, and the reasons for choosing to continue with pregnancy despite being eligible to receive a medical termination of pregnancy. We also identified the challenges, the motives interfering in decision-making, and the consequen...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0270-9
更新日期:2018-05-02 00:00:00
abstract:BACKGROUND:Community engagement (CE) models have provided much needed guidance for researchers to conceptualise and design engagement strategies for research projects. Most of the published strategies, however, still show very limited contribution of the community to the engagement process. One way of achieving this is...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0236-3
更新日期:2017-12-13 00:00:00
abstract::The 3rd Pan-African Ethics Human Rights and Medical Law (3rd EHRML) conference was held in Johannesburg on July 7, 2013, as part of the Africa Health Congress. The conference brought together bioethicists, researchers and scholars from South Africa, Zimbabwe, Kenya and Nigeria working in the field of bioethics as well...
journal_title:BMC medical ethics
pub_type:
doi:10.1186/1472-6939-14-S1-S1
更新日期:2013-01-01 00:00:00
abstract:BACKGROUND:The generation of evidence is integral to the work of public health and health service providers. Traditionally, ethics has been addressed differently in research projects, compared with other forms of evidence generation, such as quality improvement, program evaluation, and surveillance, with review of non-...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-15-61
更新日期:2014-08-08 00:00:00
abstract:BACKGROUND:The past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practice...
journal_title:BMC medical ethics
pub_type: 杂志文章,评审
doi:10.1186/s12910-016-0153-x
更新日期:2016-11-10 00:00:00
abstract:BACKGROUND:Precision medicine (PM) is an emerging approach to individualized care. It aims to help physicians better comprehend and predict the needs of their patients while effectively adopting in a timely manner the most suitable treatment by promoting the sharing of health data and the implementation of learning hea...
journal_title:BMC medical ethics
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更新日期:2020-02-19 00:00:00
abstract:BACKGROUND:The use of empirical research methods in bioethics has been increasing in the last decades. It has resulted in discussions about the 'empirical turn of bioethics' and raised questions related to the value of empirical work for this field, methodological questions about its quality and rigor, and how this int...
journal_title:BMC medical ethics
pub_type: 杂志文章,多中心研究
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更新日期:2017-12-22 00:00:00
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journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-8-3
更新日期:2007-04-10 00:00:00
abstract:BACKGROUND:How should clinical ethics support services such as clinical ethics committees (CECs) be implemented and evaluated? We argue that both the CEC itself and the implementation of the CEC should be considered as 'complex interventions'. MAIN TEXT:We present a research project involving the implementation of CEC...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00522-1
更新日期:2020-09-01 00:00:00
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journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00560-9
更新日期:2020-11-18 00:00:00
abstract:BACKGROUND:Mobile applications and socio-sexual networking websites are used by outreach workers to respond synchronously to questions and provide information, resources, and referrals on sexual health and STI/HIV prevention, testing, and care to gay, bisexual and other men who have sex with men (GB2M). This explorator...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0216-7
更新日期:2017-11-03 00:00:00
abstract:BACKGROUND:Intensive care physicians often must rely on substitute decision makers to address all dimensions of the construct of "best interest" for incapable, critically ill patients. This task involves identifying prior wishes and to facilitate the substitute decision maker's understanding of the incapable patient's ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-11-1
更新日期:2010-02-10 00:00:00
abstract:BACKGROUND:Since 2010, the European Journal of Anaesthesiology has required the reporting of five items concerning ethical approval in articles describing human research: ethics committee's name and address, chairperson's name, study's protocol number and approval date. We aimed to assess whether this requirement has h...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0289-y
更新日期:2018-06-08 00:00:00
abstract:BACKGROUND:Few studies have examined factors associated with willingness of people living with HIV (PLHIV) to participate in HIV treatment clinical trials in Sub-Saharan Africa. We assessed the factors associated with participation of PLHIV in HIV treatment clinical trials research at a large urban clinical and researc...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00516-z
更新日期:2020-08-24 00:00:00
abstract:BACKGROUND:HIV prevention research in resource-limited countries is associated with a variety of ethical dilemmas. Key amongst these is the question of what constitutes an appropriate standard of health care (SoC) for participants in HIV prevention trials. This paper describes a community-focused approach to develop a ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-10-17
更新日期:2009-10-09 00:00:00